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Anxiety in autistic people

Dr Jacqui Rodgers, Senior Lecturer in Clinical Psychology at Newcastle University, discusses why autistic people may experience anxiety. Jacqui also explores how to identify anxiety in autistic people and outlines some treatments options.

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Author: Dr Jacqui Rodgers

Anxiety in autistic people

Anxiety is more common in autistic individuals than it is in neurotypical individuals (van Steensel et al, 2011, Lugnegård et al, 2011). The consensus is that around 50% of autistic people will experience anxiety that has a significant impact on their everyday lives (Simonoff et al, 2008).

Evidence suggests that when autistic people experience anxiety there may be some aspects of their experience that are different from anxiety as experienced by non-autistics (Kerns et al, 2014). There are 4 key areas that may especially relate to anxiety for autistic people:

  • difficulty recognising emotions of self and others
  • sensory sensitivities
  • difficulty with uncertainty
  • performance anxiety

Difficulty recognising emotions of self and others

Research suggests that autistic people may have difficulty recognising their own emotional state and the emotional reactions of those around them (Maisel et al, 2016). This may mean it can be more difficult to understand and process feelings of being scared or safe – and of course this in itself will be scary. It may also result in anxiety in social situations because it is so hard to ‘read’ other people, making the world a more unpredictable place.

Sensory sensitivities

It is well documented that autistic people may have additional sensory processing difficulties, such as sensitivity with sounds and touch. Feeling like one is being constantly bombarded by sensory stimuli can be extremely anxiety provoking (Wigham et al, 2015).

Difficulty with uncertainty

For some autistic people, uncertainty can lead to heightened anxiety (Boulter et al 2014). This uncertainty may interact in important ways with other aspects of anxiety for autistic people. For example, having sensory sensitivities and being unsure if you will stumble across these sensory triggers in new situations may make you less able to manage change or uncertainty (Wigham et al., 2015). Similarly, having difficulties recognising your own internal state and the emotions of others will increase the amount of uncertainty in the world (Maisel et al, 2016). 

Performance anxiety

Fear of failure can be a significant and anxiety provoking issue for autistic people, and may result in a reluctance to try new things or complete tasks like homework or job related activities, unless there can be a guarantee of success.  Being unsure about whether you can do things perfectly can lead to a lot of worry and avoidance, creating a vicious cycle of anxiety (Rodgers et al, 2016). 

Identifying anxiety

Assessments for anxiety are rarely tailored for autistic people and there may be some important ways in which autistic people respond when they are feeling anxious that may not readily be recognised as anxiety. For example in our research (Joyce et al 2017) autistic adolescents and adults have told us that when they are feeling anxious:

  • they may become more repetitive in their actions
  • they may spend more time on hobbies and interests
  • they may become more insistent on routines, perhaps as a way of managing uncertainty, fear of failure and sensory input. 

it is helpful to be aware of these possible changes as they may be an important indicator of a change in mood and an increase in anxiety. 

Researchers have begun to develop assessment methods that are designed for and validated with autistic people. The Anxiety Scale for Children - ASD (ASC-ASD) is a twenty four item self or parent report questionnaire validated with autistic children aged 8-16 years, and is free to download. Research is ongoing to develop a version of the tool for autistic adults and those with co-occurring intellectual disability. 

A more detailed form of assessment is a clinical interview. The gold standard anxiety assessment for neurotypical children is the Anxiety Disorders Interview Schedule (ADIS), an in-depth semi-structured interview undertaken with parents. Work is currently underway by Connor Kerns in the USA to adapt the ADIS to make it suitable for use with parents of autistic children (Kerns et al 2014). The ADIS-Autism Spectrum and Developmental Disorders (ADIS-ASDD) is due to be published in 2018 and will make an important contribution to clinicians’ and researchers’ toolbox.

Treatments for anxiety

Treatments for anxiety, like cognitive behavioural therapy (CBT), are recommended and the evidence for their use is promising. However these approaches may need some adaptations to meet the needs and learning styles of autistic people. It may be important to support autistic people to develop more recognition and understanding of their own emotions before standardised CBT approaches can begin. This process may be anxiety provoking in itself, and so techniques like mindfulness may be helpful to some.
 
From our research we would suggest a focus on reducing anxiety around uncertainty might be pivotal. A two pronged approach is key here:

  • reduce uncertainty by ensuring that where possible autistic people know what to expect
  • reduce anxiety related to uncertainty through very gradual exposure to uncertain situations, if suitable for the individual. 

We have begun to develop approaches which aim to reduce the difficulties that some autistic people experience with uncertainty (Rodgers et al 2017). 

In summary, anxiety is common for autistic people and may have some features that differ from anxiety experienced by neurotypical people, making it important to seek the type of suitable and validated assessments mentioned above. In order to recognise anxiety in autistic people we should also be aware of any meaningful changes in their day to day behaviour or activities. Techniques like CBT are helpful but may need to be adapted to meet the needs of autistic people. 

References

Boulter, C. et al (2014). Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 44(6), pp1391–402

Joyce, C. et al (2017). Anxiety, intolerance of uncertainty and restricted and repetitive behaviour: Insights directly from young people with ASD. Journal of Autism and Developmental Disorders, 47(2) pp3789-3802

Kerns, C.M. et al (2014). Traditional and atypical presentations of anxiety in youth with autism spectrum disorder. Journal of Autism and Developmental Disorders. 44(1), pp2851–2861

Lugnegård, T., Hallerbäck, M.U., Gillberg, C. (2011). Psychiatric comorbidity in young adults with a clinical diagnosis of Asperger syndrome. Research in Developmental Disabilities, 32(5) pp1910-7

Maisel, M. et al (2016). Modeling the cognitive mechanisms linking autism symptoms and anxiety in adults. Journal of Abnormal Psychology, 125(5) pp692-703

Rodgers, J. et al. (2016). Development of the anxiety scale for children with autism spectrum disorder (ASC-ASD). Autism Research. 9(11), pp1205–15 

Rodgers, J. et al (2016). Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES©) Programme. Journal of Autism and Developmental Disorders 47(12) pp3959-3966 

Neil, L., Olsson N.C, Pellicano, E. (2016). The relationship between intolerance of uncertainty, sensory sensitivities, and anxiety in autistic and typically developing children. Journal of Autism and Developmental Disorders. 46(6), pp1962-73

Simonoff, E. et al. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), pp921-9.

van Steensel, F.J., Bogels, S.M., Perrin, S. (2011) Anxiety disorders in children and adolescents with autistic spectrum disorders: A meta-analysis. Clinical Child and Family Psychology Review, 14(3) pp302-317

Wigham, S. et al. (2015). The interplay between sensory processing abnormalities, intolerance of uncertainty, anxiety and restricted and repetitive behaviours in autism spectrum disorder. Journal of Autism and Developmental Disorders. 45(4), pp943-52 

Date added: 22 February 2018

 

Comments

Lee Foster

Thu, 08/03/2018 - 14:12

Anxiety is the bigget problem for me. This article is really good as I can fully relate to performance anxiety. CBT can be good if you can get your head around it. It helps to push the main issues away from your immediate state of mind - but it doesn't seem to get rid of that underlying anxiety. Not even the medication works - I think it's just part and parcel of my autism and I just have to continue 'dealing' with it as I've done all of my life.

Fri, 01/06/2018 - 06:25

Well documented article though I would have appreciated some data and research on using meds to manage anxiety among the adult autistic population as well as more detailed information on how CBT can be of use.  We do need to recognize practical approaches, a tool box of sorts, for those on the spectrum to access when anxiety begins to interfere with functionality.